title: Validation study of an end-of-life questionnaire from the Swedish Register of Palliative Care.
abstract: Quality in health care is important to measure and palliative care is no exception. The Swedish Register of Palliative Care (SRPC) is a national quality register that focuses on the last week of life. It collects data with an end-of-life questionnaire (ELQ), which is validated in this study.
  
  
  METHODS
  This study included 169 consecutive patients who had died at a palliative unit. That unit had developed a computerized end-of-life medical record module that enabled a comparison between reported data and medical records, illustrating the validity of the registry questionnaire. The paper versions of the ELQs filled in at the unit were also inspected to determine the extent of registration mistakes when completing the web questionnaire.
  
  
  RESULTS
  Data from the medical records and data from the ELQs reported to the SRPC showed a congruity of 22 to 100%. A working limit of acceptable congruity was set to 80%. Eight questions fell below that line. Some of these differences were caused by systematic errors. The paper versions filled in at the unit and the data from the ELQs reported to the SRPC had a congruity of between 96% and 100%, with the exception of one question about pain evaluation, which had 91% congruity.
  
  
  CONCLUSIONS
  The results in this study will be used to improve and further develop the register. Some questions need to be more specific to promote more valid registrations. Consensus on quality issues in end-of-life care would simplify the work of writing and answering the questionnaire. It is desirable to perform a similar study at hospital wards that do not specialize in palliative care; however, the anticipated lack of palliative documentation could make such a study difficult to perform.
authors.affiliation: Institution of Radiation Sciences, Umeå University, Sweden. lsaman04@student.umu.se
authors.forename: Lisa
authors.initials: L
authors.lastname: Martinsson
authors.forename: Per-Anders
authors.initials: PA
authors.lastname: Heedman
authors.forename: Staffan
authors.initials: S
authors.lastname: Lundström
authors.forename: Greger
authors.initials: G
authors.lastname: Fransson
authors.forename: Bertil
authors.initials: B
authors.lastname: Axelsson
mesh_terms: D006801:Humans; D008499:Medical Records / Q000592:standards / Q000706:statistics & numerical data; D010166:Palliative Care / Q000379:methods / Q000592:standards / Q000706:statistics & numerical data; D011787:Quality of Health Care; D011788:Quality of Life; D012042:Registries / Q000706:statistics & numerical data*; D011795:Surveys and Questionnaires; D013548:Sweden / Q000453:epidemiology; D013727:Terminal Care / Q000379:methods / Q000592:standards / Q000706:statistics & numerical data